Including all voices in international data-sharing governance

Area of Science:

• Biomedical Research
• Data Governance
• Health Informatics

Background:

• Governments and institutions promote data sharing for research advancement, aiming to maximize return on investment, reduce waste, and enhance transparency.
• Data-sharing practices are becoming standard worldwide, impacting various research fields and necessitating robust governance frameworks.
• Current governance systems for biomedical research are often nationally based and ill-equipped for international data sharing complexities.

Purpose of the Study:

• To highlight the limitations of existing governance frameworks in international biomedical data sharing.
• To advocate for more inclusive and representative governance structures that incorporate all data providers.
• To propose strategies for enhancing transparency, accountability, and accessibility in data sharing.

Main Methods:

• Analysis of current governance frameworks for biomedical research data sharing.
• Identification of inequalities perpetuated by existing systems, particularly for low- and middle-income countries and underrepresented data providers.
• Development of recommendations for improved governance, emphasizing public consultation and digital technologies.

Main Results:

• Existing governance frameworks are inadequate for the complexities of international data sharing.
• Current systems can perpetuate inequalities by obscuring contributions from diverse data providers.
• There is a moral imperative to include data providers in decision-making processes.

Conclusions:

• Recommend enhancing science governance through public consultations on data access and use.
• Advocate for the inclusion of all data providers in decision-making regarding data sharing.
• Promote the use of digital technologies to improve accessibility, transparency, and accountability in research data sharing.